Finding Our New "Normal"

Tommy and I returned from our cruise Monday evening.  We had an enjoyable time, saw some beautiful sites and experienced some rough waters. ~smile~  I'll save further details for a later blog entry.

Dad's door plaque

I wish that I could tell you that Daddy had drastically improved when I saw him today.  But, drastic improvements are not the "norm" with this condition.  Small improvements are about as good as it gets and at times patients have declined or shown little to no improvement for a time.  Daddy had one of his best days last Friday and was encouraged, but has not had a good day since.  He feels as though he is declining, but from all that we read and know, this is normal during the recovery.  A bit discouraging, but not alarming.


Speaking of normal........we are all in the process of finding our "new normal."  Things have not been normal in about 6 weeks and they will likely not be for a long time, so we have to adjust.  It is a tough place to be, but we have to make the best of this situation.

 

This beautiful wreath, hanging on Dad's door, was a gift from a dear friend.

Dad's Physical Therapy begins at 9:00 AM each morning and goes for a couple of hours.  He is pretty much worn completely out when it is over  and usually has a nap afterwards before he eats lunch.  Around 1:00 PM he goes for more therapy which is concentrated on breathing exercises.  This is about 30 - 45 minutes.  He comes back to his room and rests of the remainder of the afternoon and evening. For the local folks, he does enjoy short visits and generally after 2:30 he has napped and recovered somewhat from his therapy and is able to visit for a brief time. 


His voice is still very weak and it takes a lot of effort for him to hold any length conversation.  This is most frustrating for him but it has improved and hopefully within the coming weeks it will get stronger.  He would be able to enjoy phone visits and visitors so much more.  It's almost impossible for him to talk on the phone right now. He is feeding himself much better now and we're hopeful that his appetite will increase in the coming days.  The Dr. did start him on B12 shots last week and he will get one a week.  We're hopeful this will help him regain some strength. I think I've overused the word "hopeful" but that seems to be the best word to describe where we are at this time.


We have a lot more questions than answers right now, but the one thing we do know is that God is in control.  We have to remind ourselves of that daily.  We thank each of you for your continued prayer support. We have felt your support and we know that it is what keeps all of us going during this time.  Often we find ourselves thinking way too much about Dad's future instead of just taking it one day at a time.  He told me today that when he is alone, his mind wanders and wanders and this causes discouragement to creep in. 


I am planning to get back with my regular blogging posts this next week but will plan to do a blog entry on Dad's progress once a week.  I'm not sure if that will be on  the same day each week, but that is my goal. Check back  in about a week and I will do my best to have a post concerning his progress and if you  want to email me, I will do my best to respond in a timely manner.


Again, your prayers are one of the sources of our strength during this difficult time.  Love to you all!

 

And, the Journey Continues

 Some days the road to recovery seems mighty, mighty long for Daddy and he gets discouraged.  Some days the road to recovery seems mighty, mighty long for me as well and I get discouraged.  Other days, I'm reminded that the Lord knows right where we are, has not forgotten us and will continue to give us strength for this journey.


Daddy continues to make small improvements every day.  All of us would love to see HUGE improvements, but we are thankful for each small step that he takes.  His breathing is much better and his voice is a bit stronger.  


He is worn completely out after his therapy sessions and he longs for more stamina. But, along with everything else, it will return slowly and to what degree, no one knows.  

Tommy and I will leave on our cruise Thursday morning.  We are going to Montreal, Canada and cruise down to Boston.  We will stay two days in Montreal before boarding the Holland America cruise liner and then we will stay an extra two days in Boston before returning home.  We will be back on the 25th.


I dread telling Dad good bye tomorrow but I leave with the assurance that he will be in good hands with Sybil, Joel and the sitter. The sitter is now staying from 8:30PM until 7:30AM. It was not working well with him not having someone with him all night.  We have been blessed with a wonderful sitter and we are so grateful for her.  

I covet your prayers for me as we leave. Prayers that I can step back from all of this for a few days and enjoy this trip. It has been on our calendar for months.  And, I continue to covet your prayers for Daddy and his recovery.  I'm hopeful that when I return he will have made HUGE improvements.  ~smile~


Thanks to all of you for your continued support during this time. The cards, emails and visits have meant so much.  Dad has enjoyed seeing those of you that have dropped by and you have brightened his day.


Blessings to you all and I promise to update as soon as I can upon returning home.

Settling In ----- Update on Daddy

I cannot believe that it has been 4 1/2 weeks since Daddy was stricken with Guillain Barre Syndrome.  It was June 4th that his life went spiraling out of control, right along with ours.  Of course, I think it's only natural at a time such as this to think that you are the only family facing challenging times.  It is so all consuming that you cannot imagine that there is another person in this world facing such tough times.  But, as we have gone along, the Lord has reminded me that there are so many folks facing tough times, and a lot are certainly tougher than ours.  It has certainly helped me to keep things in perspective recently.


Daddy is settling in to his new "home away from home."  His day consists of Physical Therapy and Occupational Therapy and a whole lot of "empty time."  His sessions of PT and OT are rather short right now because he isn't able to hold up to any longer, but each day he is able to do more.  He is walking better and better with a walker.  He cannot walk unassisted but he's certainly much less assisted now than he was this time last week.  His hands are much more flexible and his arms are stronger.  His shoulders still have a ways to go, but I feel like that they will be showing signs of improvement soon.  He has started feeding himself some and can raise and lower his bed and operate the remote control for his TV.  Now, these things are still frustrating tasks for him but each day seems to bring more ability.


He dresses in regular street clothes for his therapy sessions and he looks really good considering what he's been through.  He's minus about 15 pounds, but we are hoping to get that back on him as soon as his appetite increases.


His breathing is much improved, thus his voice is getting stronger.  Both still have a ways to go, but at least his voice is above a whisper now.

He spends a lot of his day either in his wheelchair or his recliner.  He is so glad to not have to spend all day, every day in the bed.  He can even roll himself a short distance in his wheelchair.  All of these things are steps toward independance.

Sybil and I are in and out throughout the day and a sitter is coming from 5:00 - 10:00PM right now.  The late evenings are the toughest part of his days and he seems to do much better mentally if he has someone with him until he goes to sleep.  We were blessed to find someone that came highly recommended and Dad enjoys her company.  


Tommy and I have had a cruise booked for 6 months to celebrate our 40th wedding anniversary.  We are to leave this Thursday and we didn't know if we were going to get to go, but it seems that it is going to work out and we are preparing to go.  Joel will be coming for a few days while we are gone to encourage Daddy on his journey and the sitter will be available to assist Sybil as needed.  We'll be gone 12 days and I will be excited to see the progress he has made when we return.  


I will update again before we leave, either Tuesday or Wednesday.  We thank you for your continued prayers.  Daddy still has a long ways to go, but when I think back of where he was just a week ago, he has made so much progress.  We praise the Lord for His continued strength and grace for each new day.  Blessings to each of you!

Closer to Home

The above is a picture of Daddy's new temporary home.  And, it happens to be just across the street from where he and Sybil live.  When he is able, he can go outside the front of the facility and see their house.  And, Sybil can walk back and forth for her visits.  Very  convenient!

We have been waiting on this transfer for what seemed like forever, but it was really only about 3 days.  There was all kinds of paper work to be completed by LSU Medical Center, The LeGrand Rehab and Medicare.  Oh, my goodness, all we could do was hurry up and wait because our hands were completely tied.  I was ready to shout when I got the call that everything had been completed and they were ready for the transfer.


Daddy had said that he did NOT want to come by ambulance, but he had a "  change of heart"   yesterday and decided that it would be best.  We were glad he made that decision because we felt that it would be the better choice.  Just too many "  ifs"   coming in a vehicle with no medical personnel nearby. But, you will never believe that the ambulance had a flat tire on the way today.  I mean, what are the chances?  So, to say the least, it was a most difficult trip and he was very "  discombobulated"  when he arrived at The LeGrand.


Sybil and I were there waiting on him and had his room in order when he arrived.  We are both so glad to have him nearby and we are praying that in the next few days that he will be settled in and content with his new surroundings.  It is the 4th facility that he has been in since June 4th, so it's a wonder that he doesn't stay in a state of confusion.  But, his mental alertness through all of this has been amazing!


Dad continues to show little signs of improvement each day.  Yesterday he pulled himself up in the bed by using the side rails on his bed.  That was a huge improvement and it is so helpful to the caregivers.


He is discouraged and really fighting depression.  He said this afternoon, "  I just want things like they use to be."    Oh, me, my heart hurt for him and it is our prayer that one day things will be close to the way they use to be.  I ask your prayers for this.


And, his voice has improved a tiny bit but still so very, very weak and when he speaks, you have to be nearby to even hear him.  This is especially frustrating to him as he tries to communicate.  And, we all know what a robust voice he has always had.  

We thank you for your continued prayers and for your cards and emails of encouragement to him.  We are holding on to God's grace each new day as it is all that has seen us through or will see us through this journey.

I will blog again sometime this weekend. 

And, Life Goes On

It's  amazing to me that no matter what is happening, life goes on.  I suppose that is a good thing.  It keeps us from being totally consumed with whatever we may be otherwise struggling with.  I've wished these past 22 days that life would just stop, but it hasn't.  We go forth, asking for grace each day, and put one foot in front of the other.

 When I see this picture of Daddy, it makes my heart literally hurt.  To see him struggle day after day to regain his lost strength and rebuild muscles that have deteriorated is not anything that I would have ever imagined.  Life has thrown a huge curve ball and we are still struggling to wrap our minds around it.

The plan for Daddy at this time is to move him to a Skilled Care Rehab facility in Bastrop.  That is expected to occur by this next Wednesday but nothing is in writing at this time.  He is hoping that the Drs. will allow him to be transferred by car.  He said ambulance rides are for folks that are not aware that they are riding in one. ~smile~ The ride over here in an ambulance was most unsettling to him.


Once in the facility he will have a lot of adjustments just to get settled in.  We're praying it will be a smooth transition for him.  He will be involved in PT and OT and it is our prayer that very soon he will begin to see some noticeable improvement in his movements and strength.  And, please join us in praying for his breathing.  The Drs. have said that the reason he has some struggles in breathing is because the muscles of the diaphragm were weakened by the GBS.  They have him using a breathing device that will help to restore those muscles.  This not only affects his breathing, but his voice.  It is still hardly above a whisper and it is so very frustrating to him. Using this breathing device is very difficult for him and he is easily discouraged when trying to use it.

It is a tough, tough time for all of us, but most especially Daddy.  We try so hard to keep his spirits lifted, but some days it is so hard.  Please join us in prayer for this specifically.  Attitude is everything in his recovery!


Thanks for wrapping us in your love and prayers.  It means more than we can say. 

Baby Steps

It was three weeks ago today that Daddy's world  was forever changed.  This situation has served, once again, as a reminder that we never know what each new day may bring. I have found myself singing the words, "my Savior goes before me" from the hymn, "Each Step I Take" these past days.  Indeed, He has gone before us each step of the way.

I am pleased to report that Daddy was moved from ICU around noon today into a regular room.  I am at home today but Sybil was there to get him settled in.  I will return tomorrow morning and Sybil will then go for a short break. 

He is taking "baby steps" towards recovery.  Little things like moving and flexing his feet, moving his fingers, flexing his wrists, and he even stood for a few seconds with Physical Therapy Assistance. Folks, this is HUGE!  His arms and legs have been like jello, so we are so excited!  Sybil said that his voice seemed a bit stronger today as well.  His voice is barely above a whisper and he tires so easily trying to hold a conversation.  This seems to be improving.

The Drs. said that Dad will be transferred to a Skilled Rehabilitation Facility in the coming days.  We do not know if that means two days or another week.  I feel like we may have a little more knowledge about that tomorrow.  Meanwhile, we are beginning the process of making that happen.  It's paperwork, paperwork and arranging and arranging on this type of transfer.  Thank goodness there are case workers that handle all of that for the families.  We just have to answer the necessary questions.

We cannot thank you enough for your prayers.  We know beyond the shadow of a doubt that they are being answered.  I would urge those of you that are friends of Dad's to send him a word of encouragement.  If you would like to email him, please just send it to me (Lea@LeaCulp.com) and I will take it to him. (He will not be using a computer anytime soon)  If you would like to send it via regular mail, the address is:  1905 Cooper Lake Road, Bastrop, LA  71220.  It is going to take a lot of encouraging to keep his spirits lifted as he continues on this journey.  

I will update again sometime this weekend and in between will be posting on FaceBook.  Blessings to each of you!

The Long and Winding Road

 Yes, it has been a long and winding road these past 19 days and it will likely only get longer and more winding in the days ahead.  Yesterday was a tough, tough day for me, but today I've been able to "go forth" and face the day.  For those of you who know me, you know that I can face whatever is thrown my way, but I do have "meltdowns" during the course.  Those "meltdown" usually consist of a whole lot of crying.  I have found that, for me, crying is like therapy and medication.  It is so purifying to my soul and it is at that time that I know the Lord is hearing the groaning of my heart. 

Yesterday morning the Drs. made the decision to move Daddy to ICU.  They felt that he needed to be monitored very closely due to a decrease in his respiratory functions. At that time the Drs. said it was not a critical situation, but they were being very cautious.  Dad's team of Drs. have more than impressed me.  LSU is a state facility and is a teaching hospital and is known to have some of the best Drs. in the state.  We are  grateful to be here where we feel that Dad is receiving great care.  It is about 100 miles from our home, but that is okay. We are making it work and we will continue to for as long as is necessary.


Sybil and I were able to go in and visit Dad for the first time in ICU at 4:00 yesterday afternoon.  I had prepared myself for the worst and I was pleasantly surprised when we saw him.  He was very alert, aware of where he was and so glad to see us.  He tried to have conversation but his voice is so very weak and it takes every ounce of his energy to talk.  He has his own nurse and she was a "jewel."  I have such respect and admiration for the truly "called" nurses. They have such compassion and it is apparent that they are in the profession because of their "calling" and not just the pay.  


When I went back for the 8:00PM visit last night, he was very weak and weary, but so glad to see me.  I left there with mixed emotions about weather or not he is going to be able to beat this GBS.  It is such a devastating condition and the recovery, even for the younger person, is so, so difficult and can take months and even years.  I am trying hard not to question God but I would be lying if I said that I had not.  Why would He allow such to happen to a man who has served Him faithfully throughout his life?  That is not for me to know at this time, and perhaps I will never know. But I do know that even during this time  Daddy is being a testimony to Him and I praise Him for that.  And, I know that just when I think I cannot go on, He pulls me up and under girds me with His never failing strength.  

I was encouraged when I visited Dad this morning.  He did not seem as weak and he asked me if I would shave him.  I took that to be a very positive sign and he even wanted me to put some aftershave on him. ~grin~ Throughout this entire ordeal he has not lost his sense of pride and vanity.  He also wanted me to make sure that his hair looked presentable.

The Dr. came in while I was there and he said that Daddy had improved since yesterday, ever so slightly, but has improved.  We are grateful for any sign of improvement at this point.  He said that he would probably be in ICU a couple more days and then back to a regular room.  But, they always say, "that is if things stay as they are now."  And, things have had a tendency to change from day to day up to this point.  Another positive thing, Daddy had a good night last night.  That is the first night since he went in the hospital 16 days ago, so that was great news.  He even told me that he felt rested this morning.


It is almost time for me to go back for the 4:00PM visit and I hope that he has had a good day.  I thank all of you for your prayers and sweet words of encouragement.  Those of you that I have never personally met, you have become even more dear to me through this time.  I feel a special kinship with you and thank the Lord our paths have crossed in the "blogging world."  Those of you that are visiting my blog just as a means to stay updated on Daddy, I thank you. It is the easiest way I have to keep everyone updated and it's therapeutic  for me. ~smile~

It is indeed my faith in HIM  that is carrying me down this long and winding road.  

I will plan to update again on Thursday and in between will be posting snippets on FaceBook.