FINAL UPDATE FOR A WHILE

I was just reminded over the weekend that there are still quite a few of you who are checking the blog for updates on Karen. I apologize that it has been so long since my last posting

 

Karen continues to make great progress.  She feels great and everybody is amazed at how good she looks.  Many people refer to this as miraculous and we can’t argue with that!  She has gained some of her weight back and is getting stronger every day.  She continues to do dialysis 3 times a week at the dialysis center.  We were able to go to the beach for a week at the end of July with our whole family and had a great time in spite of some rainy weather.  Karen and I will be going back for another week in early September.  She is able to get her dialysis done at the beach.

 

Many have asked about what the future holds for her.  Currently she is still accruing time on the transplant list and she did not lose any time because of the failed transplant.  Currently she is not eligible to receive a transplant if one were to become available as they want her to continue to gain strength before considering another transplant.  She continues to do hemo-dialysis at the dialysis center, but home dialysis (peritoneal dialysis) is certainly an option going forward in the absence of another transplant.  Right now, though, she is working on gaining her strength.  We are thinking she needs another couple of months before we start considering transplant or dialysis changes.

 

Since there are no big changes happening from day to day, my plan is to discontinue posting to this blog until something significant occurs (and when it does, I am sure you will hear about it).  As I have stated so many times before, we so greatly appreciate the prayers that you have lifted up on her behalf and we give God the glory for her healing!

 

Rusty

 

 

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Friday, July 8

Karen is doing really well and feeling good! She started driving by herself Thursday a week ago, just in time for Russ to leave for a weeklong mission trip. Once again, God's timing is perfect as Russ has been her primary driver (along with the girls and friends)! She is so glad to have her mobility and independence back.

She also joined the YMCA this week (right around the corner from our house) and has already joined an exercise class there. She is really excited about building back some strength. Her appetite continues to be good but weight gain has slowed down.

We are so thankful to God for all the progress she has made and for bringing us through all this.

Rusty

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Tuesday, June 21 Update

Karen is continuing to make good progress.  Her appetite has been much better for a couple of weeks now and as of this morning, she has actually gained about 6 pounds from her low point.  She still needs to gain some more weight (wouldn’t we all like to be able to say that!) but this is a great start!  Over this past weekend she was doing more normal activities and feeling better.  We still have a long ways to go to get her strength back to where it needs to be, but we are thankful for the progress.  So far, Karen has not been driving but we believe she is getting close to being ready for this.  I know that it will be great for her to have her mobility/independence back, but we want to make sure she is ready.  We continue to praise God for bringing her so far.

 

Rusty

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To Sharon

Sharon, I believe you may have Karen confused with someone else, but appreciate your kind post.  Please feel free to email me at rusty.rose@hanesbrands.com and we can discuss.

 

Rusty

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Sunday, June 12

We feel like we have turned another corner for the better. Karen's appetite and nausea has improved since the doctor put her on a new medicine last Thursday. She is eating better and will hopefully begin to gain back some of the weight she has lost.

The ultasound of her gall bladder from two weeks ago was normal and her neck has been fine without the soft collar. She is still very weak but we are seeing small improvements every day.

Yesterday was our 34th anniversary and we are especially thankful this year given all that Karen has been through.

Rusty

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June 3, 2011

It is hard to believe that June is here! Karen went to the ortho doctor on Thursday and the two neck vertebrae have healed nicely. She was able to get rid of the hard cervical collar. He provided her with a soft collar (optional for her comfort as her neck gets stronger) but she has been fine without it. She is sleeping much more comfortably and enjoying the freedom to turn her head and look up/down.

Her appetite continues to be an issue and she has lost more weight. Today she had abdominal ultrasounds to check out her gall bladder and digestive tract to make sure nothing is going on there. I am sure it will be next week before we hear anything from this.

Please pray for further healing and an improved appetite.

Rusty

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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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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

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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

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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

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Monday, March 28

Karen felt better this morning but not quite as good tonight. She still doesn't have much of an appetite but recognizes the need to eat to regain her strength. We are excited that she is home but also recognizing that she still has a long way to go and this recovery will take time! Please pray for an improved appetite and increasing strength.

Going forward I will only plan on posting new updates here every couple of days as things change. Thanks again for your prayers and support!

Rusty

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Sunday, March 27

We are still celebrating having Karen home.  She is not feeling too good today and having to really push herself to eat.  Climbing the steps continues to be a challenge, but getting a bit easier each time.  Thanks to all of our friends who have offered to assist with transportation to/from appointments and dialysis when I am at work.  We already have all of next week covered and part of the following week.

 

Rusty

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Saturday, March 26

It is great having Karen home! She slept great last night (her first night in her own bed in 2 months). Those $60k ICU beds aren't all they are cracked up to be! The stairs in our house are challenging right now until she gets her strength back, but she managed them fine...just took it slow and easy.

She is now scheduled for hemo dialysis from 6:30am-9:30am on Tue/Thu/Sat so I took her there this morning. Once she heals up from all the surgeries the plan is to go back to peritoneal dialysis (at home every night) which will help her return to a more normal schedule.

Enjoy your weekend and time with your family. I know we will!

Rusty

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Karen is Home!

It is hard to believe it but Karen is really home! We got to the house about 3:30 this afternoon. Russ walked in the door at 4:30 from NC State and surprised Karen! This was a total surprise to both of us.

We are looking forward to a great weekend together at home.

Thanks once again for all of your prayers and support! GOD IS SO GOOD!

Rusty

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Going Home! March 25

One of the residents from the transplant team just came by and told Karen that they are sending her home today (sometime this afternoon)! They have been talking about this for several days, but I haven’t said a lot about it since things seem to change from day to day. They feel like she is doing well enough that she doesn’t need to go through rehab. She is also feeling much better today. This is exciting for her to be able to go home, but also a bit scary for both of us as we test her limits with stairs, walking, etc. But God has been there for us through all of this and we know that he will continue to watch over us as we take this next big step!

Please pray for continued increasing strength for Karen and peace as we take this next step. Some of you have already offered to assist us with taking Karen to dialysis three days/week, doctor visits, etc. so we will certainly be calling on some of you!

There were some days when I didn’t know if this day would ever come. Once again, praise God for all that he has done it this situation!

Rusty Rose

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Thursday, March 24

Karen is not feeling quite as good today, but she did make an entire lap walking around this floor...her longest walk yet. She is also a bit frustrated. It is 5:30pm and she has been waiting all day to go to dialysis. It takes 3 hours once they start so it will be well into the evening at best before she gets back to the room and can go to sleep.

Now that she is in a regular room, she enjoyed the opportunity to see our grandbabies! (Livy and Maya Wednesday and Kessler Thursday). This brightened her days.

Rusty

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Moving on Up! Wednesday, March 23

Karen “graduated” to a regular room today!  She is feeling good and eating well and the change in scenery lifted her spirits.  Before the move she took a short walk with me down the hall and did very well.  I was also able to take her up in a wheelchair for a short visit in the sunshine on the 12 floor open air terrace before it got cloudy and windy and too cool.  She seemed to really enjoy that as well. 

 

The doctor said that they are still trying to get her into rehab but feel like the Sticht Center was reluctant to take her directly from Intermediate Care Unit (IMC).  He said that either they will decide to now take her into rehab (now that she is on a regular floor) or they may decide she doesn’t need it and send her home without rehab (but not without spending at least a few days in a regular room).  I will keep you posted on that.

 

I know that she wants to see all of you soon, but she is still not ready for visitors at this point as she needs to concentrate on continuing to regain strength and continue her recovery.

 

Praise God (again!) for all the blessings he has given us!

 

Rusty

 

 

 

 

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Tuesday, March 22

Karen had dialysis today (this time they took her to the dialysis area in the hospital instead of doing it in the room). She came back feeling pretty good this time and ate a pretty good dinner as well.

Supposedly the doctors are going to enter an order tonight to move her to a regular room on the transplant floor but right now there are no beds available. So we wait! There is still talk of moving her to rehab at some point but that seems to be moving slowly (Baptist Hospital certainly teaches you to be patient!)

Karen is growing stronger each day and more able to move around on her own. If they wait long enough for rehab we may not need it!

Please pray for increased strength and encouragement. The long hospital stay is wearing on her a bit but she is hanging in there knowing we are getting closer to bringing her home!

Rusty

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Monday, March 21

Believe it or not, today marks two months that Karen has been in the hospital (with the exception of one week at home). She has been through a lot but we are very thankful for how far she has come!

Today is another good day and Karen is feeling good. We are still waiting on whether she will move and where!

Rusty

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Sunday, March 20

Karen is about the same today as yesterday. She ate a decent breakfast and lunch and is feeling pretty good. Unfortunately we spent most of Saturday waiting for the dialysis folks to show up and were not able to get her outside. Maybe we can get her back out when the weather warms up again.
Doctors are still considering moving her to a regular room or to Sticht Center early in the week. Sticht Center will be evaluating her next week to make sure she is ready for rehab.

To our P/B Sunday School class: Karen L will be out of town next week and not able to notify you when I update the blog, but I think you all are used to it now and can just check the site from time to time on your own:

www.karenskidneys.blogspot.com

The latest post is always at the top with previous posts shown on the right side. Thanks so much to Karen L for her dedication in doing this up to now!

Great to see many of you in church this morning and so much appreciate all the prayers and support!

Rusty

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Saturday, March 19

Friday we got to take Karen out on a patio in the sunshine for about 30 minutes and she loved it (first time she has been outside in about 6 weeks). Her comment: "This is better than any drug!" She even got a little bit of pinks in her cheeks from the sun.

Yesterday was a really good day (best day yet) and today seems equally good. Karen ate a big breakfast and is feeling good. Then mid-morning she sent me to get her a bag of Cheetos and then ate a baked potato from Wendy's for lunch. We are extremely thankful for the appetite (a definite answer to prayers!). We had hoped to get her back outside today, but have to work around her dialysis which is scheduled for the afternoon. She also sat up and read the newspaper today and I plan to bring her some books from home (from her personal librarian, Teresa's!)

The doctors are still considering moving her to the Sticht Center (rehab) early next week, but believe they will keep her in IMC through the weekend just to be safe. We are good with this and this will also avoid two moves.

Hope you enjoy the nice weather today. We hope to as well!

Rusty

Saturday, March 19

Friday we got to take Karen out on a patio in the sunshine for about 30 minutes and she loved it (first time outside in 6 weeks). She even got a little bit of pink in her cheeks from the sun.

Yesterday was a really good day (best day yet) and today has started off great as well. Karen ate a really big breakfast and is feeling good. We hope to get her back outside today but have to work around dialysis this afternoon.

The doctors are still considering moving her to Sticht Center rehab early next week, but believe they are going to keep her in IMC through the weekend just to be safe. We are good with this and this also avoids two moves.

Hope you all enjoy the nice weather today. We hope to as well!

Rusty

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Friday, March 18

Karen is feeling much better today. She ate really well at breakfast. They have also removed her feeding tube and she has not had oxygen support for several days!

The doctors just came around and they are considering moving her to the Sticht Center (rehab) early next week. Sticht center will evaluate her again to make sure she is ready. They are keeping her in IMC for at least another day but may move her to a regular room over the weekend as an intermediate step.

The nurses got permission for her to go outside today. I am taking a day of vacation today to spend the day with her so we plan to take her to the rooftop terrace sometime this afternoon to enjoy our 80 degree day.

God is so good!

Alert: I may not be able to post an update Saturday due to unavailability of work email!

Rusty

Thursday, March 17

Karen is not feeling quite as good today, but probably because it is time for dialysis again (treatment started after lunch). She did eat some breakfast this morning and walked down the hall a little further than yesterday. She has also been without her oxygen (nose cannula) since last night and has maintained her oxygen levels in her blood! Another step forward.

The doctors are beginning to discuss the next step and trying to decide if she should go to rehab before going home. We will be ok either way, as long as things continue to improve as they have this week.

We have so much to be thankful for!

Rusty

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Wednesday, March 16 - Another Good Update

Ashley went by at lunch time to see Karen and reports that she was sitting up in the chair again (2^nd time already today) and eating some lunch (still not a lot, but much better than previously).  In addition, PT had her walking down the hall using a walker!  This is a HUGE improvement since she could not even stand up by herself last week.  Just wanted to share the good news with all.

 

Rusty

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Wednesday, March 16

When I got to the hospital this morning, Karen was sitting up in the chair and eating a little bit of breakfast.  She didn’t eat a lot, but was taking the initiative on her own.  The fact that she ate anything and did it on her own without being pushed, is a big step forward.  She continues to be very alert and breathing well (still with the nose cannula) and her wonderful sense of humor is back.  She keeps the nurses laughing!  They started PT yesterday and she seemed to do well with that.   

 

I really feel like we are heading in the right direction.  She is still not quite ready for visitors (plus visitors are limited to immediate family in the IMC unit) but don’t think she is too far off from being ready to see some of you.  We will let you know, but this will probably have to wait until she gets moved to a regular room or rehab.  Praise God for all of the healing and improvement we have seen!

 

Today is Russ’s 19^th birthday, so we are excited about that even though he is back in Raleigh.  Happy Birthday, Russ!

 

Rusty

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Tuesday, March 15

Karen is having another good day today, alert and breathing well with just the nose cannula for oxygen!  That makes three good days in a row now, so feeling good about that.  She even spent several hours yesterday without any supplemental oxygen and did ok.   They did a “mini” dialysis treatment on Monday to pull off extra fluid then her regular dialysis treatment today.  The purpose is to manage down her fluid retention which seems to be working and helping.  They plan to start doing some physical therapy with her today or tomorrow to build back strength.  At this point she is very weak and unable to stand on her own but physical therapy should help address that.  Still no appetite!  The plan is to keep her in IMC (Intermediate Care) for the time being.  With all she has been through, they want to be cautious before moving her to a regular room where she is not monitored as closely.  We certainly agree with that plan.

 

We are thankful for these steps forward!

 

Rusty

 

 

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Monday 3/14

Karen is having another good day today. When I arrived she was sitting up in bed watching Jeopardy and answering questions! Very alert and breathing well. We are hopeful that she has taken another step forward from the slump last week.

Rusty

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Sunday

Last night and this morning Karen has been more alert and conversational. Her breathing also seems to be easier than it was earlier in the week. We pray that this is a permanent improvement and not just another "up" in the up/down recovery cycle. Regardless we are thankful for the improvement and celebrating today and not worrying about tomorrow (Matthew 6: 34).

She is still in IMC (Intermediate Care) and fluid management is the primary focus right now as well as nutrition. She still has no appetite but continues to receive tube feedings.

The outpouring of prayers, cards, well-wishes and support is amazing! Thank you all.

Rusty

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Saturday Morning

Karen seems to be breathing better this morning.  She is having her dialysis treatment this morning, so very sleepy but seems to be feeling a bit better than the last few mornings.  My understanding is that in an attempt to reduce fluid retention, they may be doing some “mini” dialysis treatments between normal Tue/Thur/Sat treatments.  These will be shorter than the normal 3 hour treatments and the goal will be fluid reduction. 

 

Rusty

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Friday Noon

No real changes today.  Doctors are continuing to see what can be done to accelerate her recovery.

 

Rusty

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Thursday Early Afternoon

Karen’s breathing has been much better today than yesterday, but she had dialysis early this morning which usually helps this by removing excess fluid.  They pulled off a bunch of fluid through her dialysis so this has left her very tired.  She is mostly sleeping today, but will wake up and answer questions.  The transplant doctors came by this morning and did say they are concerned that she isn’t progressing this week and will be doing some additional tests to see if they can get things moving.  She still has some level of pneumonia (has actually increased some) so they are considering changing meds for that.  She is also retaining a lot of fluid in her abdomen which contributes to the breathing issues.  They will be running some tests on that as well to see if they can address that.  Still no appetite.

 

Rusty

 

 

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Wednesday PM

Karen's breathing has improved as the day progressed but the hard breathing has really worn her out.

The last few days seem to be a step or two backwards but I think we have to expect some of that on this long journey to recovery. We just remind ourselves that God is still in charge and working in this situation!

Rusty

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Wednesday Noon

Not as good a day as we had hoped for. Karen has had some difficulty breathing again this morning. Some tests are being run to determine cause and treatment.

Rusty

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Tuesday PM

Karen's breathing was better after dialysis today, but as usual the dialysis left her very weak and extremely sleepy. Still no appetite.
As I previously stated, it looks like her best days will be the day after dialysis (Wed, Fri, Sun). The worst will be the days of dialysis (Tue, Thu, Sat) both before dialysis because she needs it and after because she is so exhausted from it. Monday somewhere in between!

Tomorrow will be a better day! Continue to pray for an appetite and increased strength.

Rusty

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Tuesday AM

Karen had a bit of difficulty breathing this morning but seems to be easing up.  It appears to relate to swelling/excessive fluid retention, but she is now on her scheduled dialysis treatment and that should help with removing the fluid.  Saturday to Tuesday is the longest stretch of time between dialysis treatments so that is probably why there is more of an issue on Tuesday mornings with swelling and therefore breathing.

 

No other big changes from yesterday.  She was awake much of the day yesterday.

 

Rusty

 

 

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Monday AM

Karen slept pretty well for her first night in IMC. Her appetite is still pretty non-existent so we continue to work on that. Doctors have discussed some approaches to help with that as well. Keep praying for this!

Karen sat up for about 2 hours this morning and is doing well and is watching TV.

I may begin reducing my postings to once per day unless there is some news to share. I expect changes to be fairly gradual from this point forward but will certainly let you know of any significant events.

Rusty

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Sunday PM - Finally In IMC!

We finally got Karen into Intermediate Care (IMC). When we left ICU, our favorite nurse, Ben,
played "Pomp and Circumstance" on his ipod and Karen waved at everybody with a royal wave. All the nurses laughed! Ben said this is a great way to end his weekend and 3 days of work! I think he was as excited as we are that she "graduated" from ICU!

The IMC is very nice and is more like a private room with a window looking out at Ardmore. I think it will be much easier for her to sleep.

This was a great way to end the weekend for all of us with some definite signs of improvement.

Rusty

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Sunday Morning

WOW, prayers work fast! I just put on the blog last night to pray for Karen's appetite. Her nurse called first thing this morning to tell me that Karen had eaten her entire bowl of grits and 3/4 of a nutrition pudding cup (this is a lot compared to what she has been eating). I am now with her and she is more alert this morning and her vital signs are good. We are still in ICU waiting for a bed in IMC.

Thanks again for all the prayers, cards and emails!

Rusty

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Saturday PM

Karen did well today but is very tired. She sat up twice for about 2 hours plus had dialysis for 3 hours so her fatigue is certainly understandable.

Still no open beds in IMC so she remains in ICU. Not having any appetite is the next big challenge. She really doesn't want to eat at all but really needs to in order to continue to heal and recover. Please pray for an increased appetite and for her patience with me as I push her hard to eat more!

Rusty

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Saturday AM

Karen is doing pretty good again today. Sometime today she will get dialysis. She is eating some Biscuitville grits (that I brought this morning) like a good southern girl! Her appetite is still not very good but she is trying (and I am pushing).

She is still on the waiting list to go to IMC (intermediate care) but there are 6 people on the list. Nurse doubts she will get moved today, but that is ok because she is getting excellent care in ICU. The only down side is that she is ready for a change in scenary which would help clear her head a bit.

Rusty

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Friday PM

Karen continued to do well throughout the day. She sat up for about 2 hours during the middle of the day and then rested well in the afternoon. When Russ came home late this afternoon from NC State, she was alert and upbeat.

The doctors have decided to move her to Intermediate Care (IMC) but at this point there are no beds available so they will keep her in ICU until a space becomes available. Her nurse told us that it sometimes takes several days before a bed becomes available.

Thankful for another good day!

Rusty

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Friday AM

Karen is much brighter today than yesterday (consistent with my expectation that Wed/Fri/Sun will be good days due to dialysis schedule). The plan is to get her up in a chair later today.

Transplant team just came by. They don't feel she is ready yet for a regular room but are considering moving her to Intermediate Care (IMC). They will let us know what they decide later today. They do feel she is progressing but just reminded us that recovery will be slow. We are thankful for these small steps forward.

Rusty

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Thursday Evening

After sitting up for 2 hours this morning followed by dialysis this afternoon, Karen was pretty well wiped out today. Hopefully she will get some good rest tonight and feel better tomorrow!

Rusty

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Thursday Morning

Karen is about the same as yesterday but perhaps a little more tired. The dialysis is absolutely necessary but it wears her out on the day she has it and then the longer it is after dialysis the more tired she is. So her best days will probably be the days after dialysis (Wed, Fri, Sunday). She is scheduled for dialysis today.

She has been sitting up again in the chair this morning to regain a little strength. She is sitting up about 2 hours per day. She has also been allowed to drink a Coke (which she loves)!

The transplant team just came by and has decided to keep her in ICU at least one more night so she can gain a little more strength and be watched a little closer. We all agree that this is a good idea.

Rusty

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Words from a Greeting Card

Karen received a card today with a some words that, in my opinion, describe Karen so well and I wanted to share them with you all. Here it is:

"You've been through so much lately, and I know it has taken a lot out of you and at times it must seem like things will never be normal again. But I know that you'll handle it, because you're one of the bravest people I've ever known. You might not see yourself that way, but I do...You have an inner strength that keeps you hanging on in situations that would try the best of us. That's not to say that it's easy, just that you're a fighter..." (Author: Linda Lee Elrod).

I know that Karen would say that her "Inner Strength" comes from her faith in God.

Thanks to Debbie for this wonderful card!

Rusty

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WEDNESDAY PM

Karen continues to do well tonight. She is sleepy/tired from sitting up so long this morning but still alert and communicating well (and still showing her sense of humor) but still very weak.

The plan is still to move her from ICU tomorrow after she gets dialysis subject to her continuing to do well tonight and tomorrow.

Thanks for all the comments and emails celebrating her progress. God is good!

Rusty

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OK - IT SHOULD SAY WEDNESDAY AM

For the title of the post below I put "Thursday AM" instead of "Wednesday AM!" Interestingly, this morning Karen asked me if it was Wednesday and I said, "No, its Thursday!" Obviously she is more with it than I am! Way to go Karen! (Thanks Wooten for your email setting me straight!).

Wednesday AM (Corrected Per Post above!)

Already a good day! Karen is sitting up in a chair drinking juice and eating ice chips. She is also initiating some conversation and speaking out loud. I also see some of her sense of humor back today. She told me I wasn't any better than her when I couldn't think of the word for the juice she was drinking "crangrape."

Transplant team just came by and are pleased with her progress. If she continues to do well they plan to move her out of ICU tomorrow. She may also spend some time at the Sticht center (rehab) before she goes home.

Great progress from yesterday. Praise God!

Rusty

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Tuesday evening

Karen continued to do well with her breathing. She was very tired today from a combination of breathing on her own and dialysis. They did sit her up in a chair for about an hour late this afternoon and she even ate a popsicle (the first thing she has eaten since having the breathing tube removed). She gave me a big smile and I am sure this tasted so good to her throat!

She is still not initiating any conversation but will respond by nodding her head or mouthing an answer. She is just so weak.

Please pray for a good nights rest after a long day and for strength!

Rusty

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Tuesday Morning

Things went well through the night with the breathing!  We are extremely thankful for this and for all of your prayers.  At this point Karen is only receiving oxygen through a nose canula (sp?) which is the little thing that just barely sticks into her nose to provide oxygen.  It was wonderful to see her smile at Ashley when she came to visit last night and this lifted all of our spirits.  She is still very weak and not really talking much yet, but is mouthing words to answer questions.  Today she is having dialysis at some point but not sure when.  She is now on a Tue/Thur/Sat schedule for dialysis.  That is certainly something she needs but is also very tiring for her.  I am not sure how long she will remain in ICU, but thinking for a couple of days.  Doctors said that we should count on a couple of weeks more in the hospital.

 

Rusty

 

 

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Monday 5PM - Good News

Karen was removed from the ventilator at about 3:30pm and so far so good! Please pray that she continues to breathe well on her own as this would be a huge step forward. We still have a long way to go but thankful for this positive step forward.

Rusty

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Monday Noon Update

Ashley just spoke with the transplant surgeon and they don’t seem to feel that they need to do anything right now with the pancreas. Her fever has come down and she is not having any abdominal pain so they want to leave it alone for now. They indicated that they have seen fluid there on past x-rays and the fluid may have grown a bit but that could be due to the blood thinners and a little bit more bleeding. They don’t want to do anything invasive with the pancreas (like a drain) unless her fever comes back. They believe the fever may have come from her central line (more permanent IV-type line) which they have now removed and fever has come down since then.

The lung doctors indicated that she has passed her breathing tests, but the transplant doctors have been hesitant to remove the breathing tube while she was having high fevers. If the fever stays down, perhaps they can consider this soon.

Rusty

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