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