January 7, 2017: Day +49

Doug has now been in the hospital for one month. The night I called the ambulance I had no idea what could be in store for our days to come.  Many of you have asked how the other transplant patients are doing.  They are all doing well.  I have heard of only one urinary track infection. Certainly what happened to Doug is not typical.  In fact, it is highly unusual.  Who would have dreamed...

Today was a mixture of events.  When I came in the room, a respiratory treatment mask was on Doug and it had completed.  He was saying in a soft voice, because that is all the louder he can talk right now "Help Me".  With the tube in his nose the mask on his face he feels claustrophobic.  We have been holding the mask for him so that he does not have to wear it.  I was mad. I took off the mask and laid it aside. I also found Doug's arms down in what looked to be an uncomfortable position pinned to his side. I went to the nurse and asked her where respiratory was and wanted to know who had positioned him and when. The respiratory therapist did not show up for another 30 minutes. He would have been left alone with no way to get help had I not shown up when I did.  Poor Doug spent the next few hours asking me please not to leave him.  He is afraid to be alone. Much of the time he has mucus from his lungs that he can only cough up to to the back of his throat.  I suction him the full time I am here.  If I were not here, I am not sure at what point he would get help. I can't be here 24 hours a day.  It is distressing for both of us.

I have concerns about going to a new facility so far from home. It will be months before Doug recovers, and we pray he recovers. Can I keep him safe? I try not to think to far ahead, but I have to anticipate his needs too.  He is so afraid when I am not here.

Recovery is difficult.  He looks so vulnerable laying here, but he is making progress.  Very slow progress, but it is progress. He can shrug his shoulders now and moving his head is easier for him. When the OT was working with him he could feel some resistance in Doug's arms as he extended them.  If he could get the use of his arms back it would be so wonderful.  He is still moving his hands and and toes ever so slightly.  The OT recommended I get a small balloon or ball to put in his hand and use a vibrator on the balloon to give him more sensory feedback.  I really love this OT. We have not seen him for a week.  His name is Knox.  He is from Tennessee. He does what good therapists do, he builds relationships.  He started by talking to Doug about the music he likes and talks about life in the 70's. (Doug loves oldies).  Doug likes Knox.  He responds to him.

The roller-coaster continues.  One of his nurses reminded me that he will go forward and back, and that it will take a long time to recover.  Watching your loved one struggle is so difficult.  I have no way of predicting what the next day will bring and so everything is new each day.  Perhaps if I were a doctor, I would find this challenging or interesting.  But as for me, I would like to have things only get better, less darkness and more light.  Upon reflection, our Christmas miracle is that Doug lived. The doctor's really were not a all sure that was going to happen and were constantly preparing me for the alternative. So far, day is only beginning to break on the Epiphany.

A little Facebook Quiz gave me this scripture for 2017.  It seems very fitting.  I will hold on to it.

Deuteronomy 31: 6

"Be strong and bold, have no fear or dread of them, because it is the Lord your God who goes with you; he will not fail you or forsake you."

And my friend Bev, gave me this scripture: I will hold it in my heart.

Joshua 1:5 "I will not fail you or forsake you."

 And so we pray:

God of Light, a glimpse of your presence is peaking through the darkness. It is a touch of warmth in the cold darkness. We want to draw close to it and draw strength from it. We yearn for light.  We feel your presence in ancient words and the whispering of our friends. "Be strong and bold...I will not fail you or forsake you."  We want an easier way, we want an end to suffering.  Dear God of Light, we pray that you will warm us, heal us and give us courage.  Hasten the renewal of Doug's body.  Help him to know that you have plans for him, plans to prosper him and not to harm him. We ask this, with the full knowledge that you are with us and doing better things for us than we can ask for or imagine.  Amen.

January 6, 2017: Day +48, Epiphany

Quick update  to a long day.  Doug was doing much better today.  When I came in this morning, Doug greeted me as I walked in the door.  He was much more verbal and not experiencing any pain. The Gaberpentin he was given, was very effective for his nerve pain.  Yea!   Last night he got a great night's sleep.

Today he experienced very little pain.  They are giving him a new respiratory treatment that is breaking up some of the mucus in his lungs.  This is great because his lungs are still very crackly.  He does not have a very strong cough because of the weakness of his diaphragm.  And so when he coughs most of the mucus stays at the back of his throat.  He needs a suction to expel it.  That was my job for most of the day.  The good news is that it is loosening. The bad news is that he really needs help getting it out.

The best news today is that Dr. Olani talked to our insurance doctor and he was able to get  Doug's approval to be moved to Vibra.  Yea!  That is a relief.  However, Dr. Olani is still concerned about Doug's consistent oxygen saturation and his lungs.  I don't anticipate a move now until Monday.  I am not sad about this.  I am glad he is with people who know him right now.  He is still very sick and weak.  He is moving his fingers and toes a little bit now and can feel his body if you touch it.  We are so thankful for these improvements.

Again today, he was very concerned about having me leave him. He feels very vulnerable.  He is vulnerable with not being able to move or even scratch on his own.  With the mucus in his throat and not being able to get rid of it, makes him feel like he can't breath.  He is still very worried he may die. I try not be leave him for long.

And so we pray:

Holy God: On this day of light and hope, we are so thankful for the care of Dr. Olani, to advocate for us, and to get the approval from the insurance company. We are thankful that Doug's pain is under control and that he is continuing to show improvements.  We are also are thankful  for our dear friends and family who have come to our aide with prayers, visits, shoveling our sidewalks, bringing me coffee and loaning us a car. We ask that you stay with us and guide us on this path and help us to choose the right way at every turn so that Doug may continue to heal.  In your name we ask it, Amen

January 5, 2017: Day +47

Doug's nurse at the hospital called me shortly before 9:00 this morning.  Doug asked her to call me. He had another rough night.  He has not asked to call me since before he was intubated  and so this felt like a big step.  However he had a very rough night last night.  He had not been able to sleep again because he could not get comfortable and he was having some pain. In the morning he continued to have some pain and difficulty getting comfortable. He also was coughing.  I told him I would be at the hospital within the hour.

When I got to the hospital he was still having pain and coughing.  The nurse had been with him much of the morning but was unable to make him comfortable.  She gave him Tylenol and I massaged his legs, arms and back.  We put some music that he likes on the CD player, but he continued to have pain.  He was also thinking about the possible move to new hospital Vibra.  He kept asking when he was moving?  He wanted to move.

Finally around 12:30 the doctor prescribed some morphine.  My sister Kate joined us at the hospital. I had an orthopedic appointment.  Kate stayed with Doug while I was gone.  During that time with the medication he was finally able to get some sleep.

At the doctor I learned that my knee was worse than I expected.  I indeed have meniscus a torn but also the cartilage is very worn, and I have arthritis as well.  The doctor thinks I should have a knee replacement or at the very least have arthroscopic surgery and the meniscus repaired.  He said that would be a short term fix but I would mostly likely later need a knee replacement.  He said that the x-ray did not look bad, it did not show arthritis and so it could be the MRI makes it look worse then what it is.  I told him that there is no way I can have knee replacement at this time and that I could not have the repair to the meniscus for a few weeks. Also the knee replacement does not seem right.  I have never had problems with my knees and my pain level in my knee now is pretty low with the brace. Well, needless to say this was not the news I wanted with all that we have going on.

When I returned to the hospital, Doug was awake and having pain again.  He wanted me to stay right next to him.  He continued to have more distress.  He was having difficulty breathing, with continued coughing.  He told me that he was afraid he was dying.  I assured him that his heart rate, blood pressure and oxygen level were all good. This pain may be a good thing.  The good news he is having feeling in his limbs.  The nurse gave him more morphine and he was made more comfortable and was able to rest.

Then the transition person called.  She told me that the insurance had denied the acute care hospital.  That we would have to consider skilled nursing.  I was furious. How in the world can he go to skilled nursing, when it had taken the nurse, doctor, respiratory therapist and I all day to make him comfortable enough to rest for a short time.  She told me that the doctor was going to call the insurance company.  I was quite upset and went to talk to the nurse and also ask her to call the doctor for me.  She agreed that he needs more care than skilled nursing.  The doctor then met with me at 5:00 and also agreed that Doug needs more care.  He said he would call in the morning.  I was very upset by the whole thing, especially after being called by the hospital the last couple days to come to the hosptial and Doug needing so much help and support. The doctor assured me that if the insurance company would not approve the move to Vibra then they would keep him at St. Alphonse.  I felt more assured.

Doug's pain got worse through the evening and then he developed itching all over his body.  This is very tough when you have to depend on someone else to itch for you because you can't move.  The doctor and nurse decided it was caused by the morphine.  They then changed medications and gave him medication for the itching.  To make these changes it took until about 9:30 p.m.  Finally by about 10:00 he fell asleep.  He has a really good nurse tonight.  He said he would keep a close eye on him and would try to make sure that he kept up on the medication to allow Doug to have a good nights sleep.  I was able to leave by 10:30.

My sister Kate stopped by  the hospital around 10:00 to say that she had our Dog Styder and that she was taking him home so that I don't have to worry about him with me being gone  such long hours and not knowing if I will be called back to the hospital in the night.  Doug really does not want to be left right now by me.  It was a pretty rough day on lots of levels. We pray tomorrow will be better.

Lord have mercy, Christ have mercy, Lord have mercy.  We have so much on our plates right now. Lord we give thanks for the feeling that Doug has throughout his body.  We pray that you will continue to heal him: giving him control over his body and an end to this pain.  We also pray that my knee will continue to heal so that knee replacement will not be necessary.  And we pray that Doug will be accepted to the appropriate hospital to give him optimal care to continue to recover.  In your name we ask it.  Amen

January 4, 2017: Day +46

Sometimes it surprises me how each day can be so different.  You would think I would get up and sit quietly reading a book while Doug recovers.  But instead, I have not read one page of a book since this journey began.  The days are so full.

This morning I got a phone call at 1:30 a.m.  Doug was not able to sleep and he was experiencing pain and they could not find a comfortable position for him to lay.  They wanted me to come back to the hospital. Wayne our nurse said he would do his best to make me comfortable in the recliner. I also think Doug is a little nervous about his upcoming move to the new hospital. The snow was getting deep by the time I left.  The van had some trouble making it up the little hill in our neighborhood. But I made it.  After talking to Doug, I asked the  nurse to get Doug some Tylenol and a few ice chips. Then we both settled in for the rest of the night. Doug was able to go to sleep.  I slept a little bit but mostly dozed listening to the hum of the IVs, and the alarms on the monitors. By 6:00 a.m. Wayne needed to start new medications and prepare Doug for the shift change.  I decided it was time to go home to get a little more sleep and a shower. The snow was much deeper and roads were not good.  I literally slipped into our driveway.

No one told my dog, Stryder the schedule was changing today.  By 8:00, he was awake and barking at me to feed him.  And so I did and then slipped back into bed for a little while.  That lasted about an hour and then the phone rang and I decided it was definitely time to get up.  At 10:00 I was ready to head back to the hospital.  I packed up my things for the day and started out.  But oh my, the snow was much deeper.  I made it out of the driveway and down the street, turning to go up the short hill another car was coming down in the middle of the road.  I tried to pull over a little.  But then, I lost traction and could not get started.  A neighbor was out shoveling and I asked him to help me get out.  Between his daughter and him shoveling, I eventually became unstuck, but I could not make it up the hill and so with their help I got turned around and went back home.

Just as I was walking into the house Angie called and asked if I needed anything. I said I could not get to the hospital because I could not make it out of the neighborhood.  They have a new 4x4 truck and she said she would come and get me.  Angie, Tom and Cole arrived about 12:00.  They did not have any problems with their big pick-up.  We all went to the hospital to see Doug.  They offered me their 4-wheel drive jeep and so after visiting Doug and having lunch we went to Star to get the jeep. It was great in the snow and I made it back safe and sound to the hospital.

Doug made some more gains today.  He is able to pull his hands into a slight squeeze and bend his toes a little more on the right. It was so exciting. However he is now struggling  with pain.  I think that his nerves are beginning to wake up and this is leaving him with pain in his limbs and back.  He was also frustrated today because he could not scratch his own forehead or hold his head straight. He is complaining that he cannot see the TV with his glasses.  I don't know how his eyes are effected with all this.  He was pretty frustrated tonight.

When I arrived home tonight, my colleague Cathy had come to the house with her high school son Carter.  They shoveled the driveway and sidewalk for me and left me a present at the door.  In the present was pumpkin bread, chocolates and a wall hanging.  I cut my self some bread and warmed it and settled onto the couch to watch the news and rest with a sweet treat.  Yum.  The end of a long day.

And so before bedtime, I pray:

Most Powerful and Most tender God, look with favor on your servants and bless us. We thank you for the progress that Doug has made and the hope of his continued healing  Take away Doug's pain and provide comfort and encouragement as his body heals. Give me the strength to speak the words that will comfort and support him on this difficult journey.  And Lord we give you thanks for family and friends who come to our rescue at the most needy of times.   Bless them! In your Name we ask it.  Amen

January 3, 2017: Day +45

Dear Friends, I am so glad to share this journey with all of you.  Your prayers, support and encouragement when I can hardly go on, make such a difference for us.  Your prayers are like angels whispering in our ears, helping us to keep the faith and making God known to us in our darkest hours.

This morning, I had to stay home for a few hours so that I could pay bills and get the sidewalk shoveled.  I have not paid bills since we arrived home on December 3 because I have only focused on Doug and being with him at the hospital as well as carving out a little time to be with our family to celebrate Christmas.

 Nurses Loraine and Shantel

And so I got to the hospital around 11:00 this morning.  When I walked into Doug's room he had the feeding tube in his nose and he looked up and he was glad to see me.  It was so different than yesterday: a complete turn around. Loraine, his nurse talked to Doug about the tube.  He agreed to try again. She and Shantel were able to place it on the first try.  It hurt but he was able to push through it.  I sat down next to him and told him how glad I was that he was willing to have the feeding tube. We were able to talk about the struggles we have had these past weeks and cry together.  I told him that I wish I could have protected him from all this and how sorry I am that he has had to suffer so much.  Old Doug was back, we were able to mourn together and we both felt better.

Loraine came into Doug's room shortly after I arrived to re-position him.  While here she asked him to move his hands and he moved a few fingers.  Then she asked him to move a few toes.  They have asked him these same questions for a week.  But this time, Doug moved his toes a little bit. We were all so thrilled.  It was so exciting.  I know it is not much, but it is something.  Hallelujah!

Doug's nurse Wayne

The transition person from Vibra hospital called me  to tell me that they have a contract with United Health Care and that she would be coming to St. Alphonse's to review Doug's files and make the request with our insurance to approve for Doug's transfer.  So, now we are waiting for approval but are pretty sure that Doug will be moved tomorrow or the next day. This is where it becomes somewhat sad for us. It is time for good byes to the staff we have become attached to here at St. Alphonse's these past weeks. Some of these folks have literally saved Doug's life.  Loraine and Shantel will not work again until Friday or Saturday.  John and Cheryl our respiratory therapists that have often been with us, won't work again until next week.  Dr. O.  who was with us the first week, stopped me in the hall to talk to me about how Doug was doing and to share my grief with Doug not being able to move his body.  Each of the staff that have worked with us for so long stopped to talk and to say good bye.  After such a rocky start here, we now have a new little family, that we have come to depend on. So many of these folks I will hold in a special place in my heart.

Respiratory Therapist, John

More angels surrounded us today.  Sonya brought me my favorite holiday treat, rum balls. My sister Kate came over and bought me lunch.  Fr. David came over to check on Doug, visit and pray with us. My District colleagues came by for a visit and took me to dinner.  The poetry of the journey that Deb shared and Kelly's comments on the blog remind me that we are on a camino. My first few days on the Camino de Santiago in Spain were so difficult and I wondered if I could make it and after taking step and step, the day would come to an end and we would be one day closer to Santiago.  Doug has lived to see another day and in choosing the feeding tube, he has chosen life, struggle, hard work and someday glory. The road is long, but for today, we took another step.

On this Camino, we can't go back, we can't stay where we are, we must go forward. With God's help and each of you, we will move forward. God bless all of you for your prayers and support.

Holy One, Light in our darkness, thank you for lighting our path today.  Thank you for strengthening our hope, with showing us small improvements. Thank you for giving us friends to share this journey, who nurture us through their words and love.  Thank you for the relationships we have found with some very special staff and doctors. We continue to pray, that as each day comes that Doug  will continue to experience improvements in health and strengthen his faith in your goodness. In your name we ask these things, Amen

January 2, 2017: Day +44

Today I went to the hospital hoping and praying that Doug would be awake and feel better.  That was not to be.  He was sleeping soundly when I arrived a little after 9.  I went in search of the doctor and the nurse.  The doctor told me that he had been in to talk to him in the morning and that Doug had refused to move his fingers. He did not want to talk.  Doug seemed annoyed.  The doctor and nurse do not think that there is a change in his physical condition but that what is happening with him is more of an emotional response to his condition.

I went in and greeted him and told him the Rose Parade was on and encouraged him to watch it with me.  We have always loved watching the Rose Parade together.  He would not watch it or talk to me. He closed his eyes and went to sleep.

Bishop Brian and Ardel came by to see him and pray for him.  He was engaged in the prayer and seemed to appreciate having them and having the Bishop lay hands on him.  While he did not really talk with them, he responded with amen a couple of times.

Shantel came in to re-position Doug.  She asked him if he would agree to a feeding tube.  Telling him it was important for him to receive some nutrition.  He agreed.  Later in the afternoon she came in to place the feeding tube.  After beginning to place the tube, it really hurt him and he was yelling out and upset.  She would go slow giving him time to adjust to the feeling, but it really hurt him and he was really upset.  He said he would rather die then have the feeding tube.  And so she quit.  We decided we could revisit it tomorrow.  He went back to sleep.

I think he is totally overwhelmed and upset by all that he has experienced. He only has partial movement of his head. He has no control over the rest of his body. His voice is gravelly and difficult to understand sometimes.  He has just been through 10 days of being intubated and now he has spent one week unable to move or control his body.  It is horrifying for me to watch each day.  I feel so helpless.  My sadness for him is so great. We did the original treatment of HSCT so that he would not have to experience this with MS and yet here we are.

My friend Bev, came by, who teaches in the nursing department at BSU and is a critical care nurse at St. Luke's. She says she is encouraged by his progress and hopeful.  I think it is difficult to feel this way when you came to the hospital for a cough and fever. The fact that a whole week has gone by since he was extubated and no one warned us this might happen. We were totally unprepared for this. But, I also think it is fair to say that we have been unprepared for all the things that have happened to Doug in the last month.  All this makes our trip to Mexico and the transplant seem like a very pleasant vacation.

Sonya Shue visited the other day.  Sonya was the organist at Grace while we served there.  She was sharing memories with us.  She reminded me that Doug's favorite hymn was "I Want to Walk As a Child of the Light". I have been humming it since she shared that memory with me.  Instead of a prayer tonight, I think I will share this song that has always been meaningful to Doug with a link to it being sung on You Tube.

In this time of darkness for Doug, please shine on his heart Lord Jesus and make him well.  Amen

https://www.youtube.com/watch?v=QISk0oYYpuk

I want to walk as a child of the light;
I want to follow Jesus.
God set the stars to give light to the world;
The star of my life is Jesus.

Refrain

In him there is no darkness at all;
The night and the day are both alike.
The Lamb is the light of the city of God;
Shine in my heart, Lord Jesus.

I want to see the brightness of God;
I want to look at Jesus.
Clear Sun of righteousness, shine on my path,
And show me the way to the Father.

Refrain

I’m looking for the coming of Christ;
I want to be with Jesus.
When we have run with patience the race,
We shall know the joy of Jesus.

Refrain

January 1, 2017: Day +43

It is the first day of January 2017.  Time is marching on. We are still in the season of Christmas. Jesus our savior was born.  Jesus the one who has come to give us new life.  With all of the posts from so many of you, I try to stay grounded in the hope of that new life, of God with us.  Each day your posts encourage me and support us.  I can't respond to all of them as I would like too.  My mind is too distracted by all that is happening in the room at the hospital and most of all with Doug.  But I read them all; starting first thing in the morning, then in the middle of the day and before going to bed. Both Doug and I are comforted.  We both say we are blessed.  Thank you dear friends who are traveling with us on this grand camino.

We started 2017 with a bang.  Doug had a lumbar puncture (spinal tap) at 9:00 a.m.  We had the results in the late morning.  The lab tests did not reveal anything.  The doctor was looking for an infection that might explain Doug's inability to move or feel his limbs.  When he came back from the tests he was requesting water and ice.  Tiny chip after tiny chip, and 1/2 teaspoon at a time I gave him what he wanted.  His swallowing was much better this morning and he had both eyes fully open and was moving his head more from side to side and up and down. He asked if he could have toast.  He is showing an interest in eating.  Of course he can't because he cannot swallow well enough

The doctor called me around noon to let me know that the test was negative.  We also talked about a feeding tube and agree that we would wait for the SLP evaluation in the morning.  Perhaps he is close to eating.  If he is close to eating we would not want to go with a feeding tube.  The doctor also talked to me about moving Doug to an acute care hospital.  We agreed to start that planning on  Monday or Tuesday if he continues to improve.  

The Physical Therapist was in and did some range of motion with him.  He and I talked about using electrical stimulation to improve his muscle tone.  He will talk to the doctor about this. 

My sister Kate came over and did some EMDR therapy with Doug which includes left/right  stimulation of his brain to help him to connect his thinking to moving his body.  

Around 12:30 Doug became very tired and fell asleep.  It made perfect sense for him to be tired. The only thing is that he slept until we left at 8:00 tonight.  I tried to rouse him a few times and when I did he was fairly despondent and his speech was very difficult to understand again.  Things do not look right to me.  I am concerned.  His white blood count is up.  The nurse and doctor are going to monitor him carefully through the night and call me if anything comes up.   I am hoping he is just tired but ask for  your prayers for continued healing.

Eternal God,  on this day we celebrate the naming of Jesus, meaning savior.  We come to you asking that your saving grace be  upon your servant Doug as he continues to strive for new life and healing. Surround him with your grace and empower him with your love.  Straighten the path that we are walking so that we might rest with ease and forgo our struggles. In your name we ask it.  Amen