January 13, 2017: Day +55

Another good day.

Today when I arrived at Vibra, Doug's nurse was with him and helping him get comfortable.  Doug needs to be moved frequently since he cannot move himself in any way.  He quickly gets uncomfortable or begins sliding over to the left or to the right.  His latest difficulty which is driving him crazy in continuous itching.  My guess is that the itching is caused by peripheral nerve pain rather skin dryness or allergy. The only relief we have found is Tylenol and Gaberpenten.

When the charge nurse asked Doug yesterday if there was anything he wanted, Doug said he wanted to get in a wheelchair and look around.  He has not been out of bed for over a month.  This seemed like a reasonable request, but not necessarily easy to do since he is not sitting on his own.  Well today, his PT took him seriously and showed up with a wheelchair that can tip back to support his head.  He got to spend over an hour in this chair today, as he and I wheeled all over the hospital and then came back to the room.  I was able to do some massage with him in the sitting position and some of the exercises that Knox, our OT from the hospital taught me. Sitting this long was a big accomplishment.  He was pretty tired and took a 2 hour nap after our adventure but it did his spirit good.

Doug sitting up with Conrad, his SLP

Doug's head control was much better today too.  He can turn his head from side to side and up and down. He cannot lay his ear to his shoulder.  He cannot move his arms on his own but can push them down from a 90 degree angle. Conrad, the Speech and Language Pathologist  tried Doug on pudding  today.  It is the first thing he has eaten by month  in over a month.  He had some choking and so he will not try it again until next week. But, it was great for Doug to try some food.  Yum...

Doug's nurse from his first night here at Vibra came to see him.  It turns out he is from Mexico and his mother is a retired doctor from Mexico.  He has family in Puebla.  It was fun to be able to talk to him about our Mexican health care, the hospitals and the clinics.  His mother and father were medical missionaries and traveled in South America and Africa.  He graduated from high school in Kenya. I am learning that Americans have many misconceptions regarding health care in other countries. It was fun to share some of the things that we have observed with him.

Well it is getting very late and I had better get to bed, thankful for another day of moving forward. I was talking with my friend Fr. David the other night about writing prayers. He suggested I use some from the Book of Common Prayer.  Tonight seems like a good night to do just that.  This prayer is from the service for Compline.

Keep watch dear Lord, with those who work or watch or weep this night and give your angels charge  over those who sleep. Tend the sick Lord Christ, give rest to the weary, bless the dying, sooth the suffering, pity the afflicted, shield the joyous, all for your love's sake.  Amen

January 12, 2017: Day +54

Today was definitely a better day overall.

Doug's first night was a little rough.  He called for the nurse with his head switch because someone had taken his cover off and he was cold.  He said he had to lay in his bed for more than an hour
before anyone came.  He felt so helpless and it was scary not being able to move or get help.  He needed  a hug and to talk. We talked to the charge nurse about it and they said they would try not to let that happen again.

Then around 10:00 the team made rounds with each department represented.  The charge nurse asked me to participate and update everyone on Doug's history.  It was definitely the short version with everyone standing in the hall outside his room, but it was nice to tell his story, because they had some misunderstandings.  The thinking was that Doug got sick in Mexico with the stem cell transplant and they had missed the fact that he had been intubated for 10 days. They all new Doug has MS, but did not know that his current problems were the result of critical care neurapathy.  So, I had to do a lot of explaining of  our last 70 days.

The staff  have been very thoughtful, kind and competent.  Just the kind we hoped for.  The doctor decided that Doug did not need to be in ICU and they moved him to the medical floor today. I was not surprised by this.  Doug's heart rate, temperature, and blood pressure have been stable since Sunday.  Today he has been alert all day and awake most of the day. This afternoon after getting to his new room he was evaluated by the speech and language pathologist.  They got Doug up to a sit with his legs hanging over the bed.  This was a huge step.  Doug has not sat for weeks.  The PT supported his back and while he was sitting the SLP did a swallow evaluation.  The SLP says Doug can continue with the ice chips and perhaps by next week he might be ready for some food with texture.  The two of them had a great sense of humor and were very helpful and hopeful.  Doug asked if he could be wheeled around the hospital, he wants to get out of the hospital room.  The PT, Liz, said she could make this happen.  Tomorrow they will take him for a ride.

Doug has been able to watch some TV again today.  He was even laughing while watching the Big Bang Theory.  I have not heard him really laugh in weeks.

Tonight as I write this blog I don't have the fear that I might get a phone call that Doug went into distress and might not make it through the night.  This has been our life for the past 3 weeks.  That 3 weeks seems  like forever.  I think we really have turned the corner.  It will take a long time for Doug to recover and I pray he does not catch anything else. I also pray that when this antibiotic ends...nothing else surfaces.

Many of you have asked about visiting. Up and till now we have limited visitors because he is immune compromised and because he has been really weak and tired.   We still have to be very careful.  People may visit him.  He would like that. He yearns to have his life back and friends can help remind him of life.  The only thing is that he could catch anything so easily so before visiting  please:
1. If you have been exposed to illness or have an illness wait until you are sure you are well to visit.
2. Wear clean fresh clothes.  We have the potential to carry germs on our clothes.
3. Upon entering please be sure to sanitize your hands and avoid touching your face.
4. If you are in doubt of whether you have been exposed to something, please wear a mask.There are masks at the hospital.

Thank you so much for helping me keep him well and me well.

Light of the world, a new day is dawning, the day is bright. Thank you for the light of this new day. Thank you for giving us caring, smart professionals. Watch over Doug as he sleeps this night.  Help him to feel safe in this new place.  Help him to feel comfort from those around him.  Fill us with strength as Doug continues step by tiny step to heal. Amen

January 11, 2017: Day +53

Here I go, counting the days again.  We just moved from St. Al's to Vibra on Doug's 35th day in the hospital.   It has been 53 days since Doug's transplant and 70 days since we went to Puebla Mexico.
What a Camino it has been.

We spent the morning completing all the paperwork to assure a successful  transition from one hospital to the other and saying goodbye to all the people who have cared for Doug these past days. I can't say that either one of us were excited to go.  We have developed some close relationships with some of the staff and will be forever grateful.  But I think Doug is ready.  He is ready for a change in scenery.  I feel a little raw and neutral.  I tried to understand my feelings.  Perhaps the best I can say is that I have a sadness that we are moving to another hospital, but most of the sadness comes from the fact that Doug is still so sick and needs to go to an acute care facility.  He has such a long way to go to come back to where he was when he entered the hospital.

The staff at Vibra were very welcoming and very professional in getting Doug settled and moved in to his room..  They had all his records and were prepared to meet his needs including having a switch for him at his bed to call if he needed something. The doctor met with us and wanted a copy of his records from Mexico.  He like others could not believe we went to Mexico and made some comment about the hospitals there. I said I have not been in any hospital as nice as the ones we were in in Puebla.  I promised to share our pictures with him.  The prejudice against Mexico is amazing.  People have so much mis-information.

Much happened this afternoon.  They changed Doug's feeding tube. It was not near as traumatic as the first time.  The one that was put in at St. Al's was very large.  Doug's nose and throat has been sore making talking and swallowing hard for him.  They put in a smaller one.  We are hopeful it will be much easier on Doug.  They did another stomach x-ray to make sure the feeding tube was placed correctly, a new chest x-ray to see how Doug's lungs were doing  with his current pneumonia, and an EKG.  Tomorrow he will be evaluated by the OT, PT, and SLP.  After that they will meet as a multi-disciplinary team to develop a longer term plan for Doug.  I look forward to participating in developing that plan.

I headed for home tonight a little after 9: Doug was pushing me out, worried about me being too tired.  He has not said anything like that for a long time.  And tonight he watched a little TV with me.  He seemed stronger.  It looks like this is a good move for him.  We are hopeful.

God of Light, thank you for lighting our path and pushing us further down the road.  Thank you for providing us just enough light to lead us to take the next step.  Be with us as Doug settles into this new place.  Continue to give him hope and courage.  Bless him with people who see him as the person he is and not the shell of a person his body presents as right now. And Lord give us providers who will help Doug to live and to recover.  In your name we ask it. Amen

January 10, 2017: Day +52

The day started early just shortly after 5:00 a.m. with a text from Kuna School District, notifying everyone that there would be no school again.  It was followed by many more texts from people commenting on having no school again.  I was chatting with my friend Lucinda, who is a priest yesterday.  I told her that I thought that God was giving me a break.  The reason we are having so many snow days is because God is giving me a break from feeling too guilty about not being at work. You see, you all have very powerful prayers creating blizzard conditions so that I don't have to go to the work!!!  However, while being blessed with snow, it was not necessarily easy for me to make it to hospital. The roads were terrible in my neighborhood and terrible tonight.  The slushy snow is very difficult to get around in and I almost got stuck again.

When i got to the hospital around 9:00 there was a sitter there for the day with Doug again. I was relieved knowing he had support when I was not there.  Doug liked this young woman.  She was very sweet with him.  I asked him how the night had gone and wondered about the sitter, who had been rather rude when she came.  He said that she was nice and helpful through the night.  I was relieved to hear that the night went well.  It is so difficult to leave him when he is so fragile and helpless.

Doug and I together met with the doctor this morning.  Even though we agreed yesterday for Doug to stay at St. Al's until the end of the week and then to move to Vibra,  this morning he wanted to tell me that he thought it was best to move Doug sooner so that he does not loose the bed that is available.  After more conversation I agreed, but asked for it could be tomorrow and not today.  He agreed.  He told me that the transition coordinator would be meeting with me soon. In the conversation with her, I asked again about an availability of a sitter at Vibra.  She told me that was unlikely and I should think about asking friends to spend the night or hire someone.  Ok, well that got me going.  I told her it was not my responsibility to make sure that Doug is safe, it is the hospitals. I told her that at some point I need to go to work.  She said well she could never work when her husband went through 3 heart attacks.  I would just have to tell my employer I can't work.  So, this conversation made me crazy.  I said, rather sharply, other hospitals ask families and provide help without the patient or advocate having to always push.  Hospitals have a responsibility to make sure that patients are cared for and my husband is helpless. Unlike her husband he cannot even push or button and can barely talk!!!  Yikes, sometimes...

Doug was very tired today. He had a difficult time getting a comfortable position. His throat is very dry and hurt all day.  This is probably caused by the feeding tube.  His voice was barely a whisper.   The edema is finally resolving some, but he is looking very thin. The good news is that he has a little more strength in his arms and is helping to move them down when they are in a bent position.. He can move his foot a little more.  All of this is very pleasing.  And today he asked to watch some MSNBC.  He has been an MSNBC junkie for years. Since they removed the tube from his throat he has not been interested in any TV. Tonight we watched President Obama's final speech, with his sitter, and 2 Respiratory Therapists giving him a treatment.  Angie and Cole came by and joined in.  It was nice to have a few minutes of normal,

So, tomorrow morning we should be moving to Vibra.  Please pray it all goes well and that it is not too much for Doug.

God of Light and Life, thank you for lighting the path for us.  We see the light through the kindness of others, who write us comments each day and send us messages of hope. We thank you for the tender mercies of our providers who care for Doug each day. We pray that with the new day tomorrow, and the new facility that Doug will feel strengthened and encouraged.  We pray too that the providers receiving him will welcome him and watch over him and make him well.  In your name we ask it.  Amen

January 9, 2017: Day +51

Last night Doug and I both got a little break.  The hospital provided a sitter for the night.  That way I was able to leave the hospital, knowing Doug had someone sitting with him and was there to help him or get help if he needed it.  And Angie came home and spent the night with me.  We watched a movie, had a glass of wine and then settled into bed.  That was the first movie I have seen in over a month.  It may be my first whole TV show too.  There was a bit of normalcy.   My sister volunteered to come in and be with Doug from 7:30 to 10, allowing me a little rest, since Angie and I did not get home until 10:30 and then we watched a movie until 1:00. I needed just a bit more sleep.  So thankful!

I met with Dr. Von Flue this morning.  My prayer was for wisdom and guidance in meeting these new challenges.  Dr. Von Flue shared with me the possible options to deal with the blood in Doug's stool and consideration for a gastric feeding tube and potential tracheotomy. He had also met with the Dr. Jackson the pulmonary specialist who has been working with Doug since we first came to the hospital.  It turns out that they were on the same page as I am.  We agreed to wait, to see how Doug's is doing and responding.  They said there was not significant blood in the stool.  Since he is handling the feeding tube fairly well, his swallow is improving and he continues to get more movement of his body; he may not need the feeding tube much longer.  We can avoid the trauma of surgery if we can hold out a little longer.  So that is the plan for now.  Also Doug's white blood and red blood counts are very low.  Dr. Von Flue has agreed to bring in a hematologist for consultation. I am very glad about this.  I had hoped they would have worked with Dr. Ruiz from Mexico, but I will settle for a local hematologist.

Some good news for today is that Doug moved his right foot from the ankle and he was more limber when the physical therapist did his stretching. So now we have moving his head side to side and up and down, shrugging his shoulders, making a slight fist with both hands, helping to move his own arms in a downward position and a full range of facial expressions.  He is also talking so that he is understandable in full sentences.  He watched TV for the first time since he was they placed the tube in his throat.  He watched the Governor's State of the State Address. After that he was ready to turn the TV off.

He really hates to have me leave him, but I do sleep better at home. The hospital had a sitter for him again tonight.  We were waiting to have the sitter arrive around 10:00 pm.  I went out to ask for more wash clothes and there was a woman outside the door checking messages on her phone.  I saw that she had a badge on.  I asked her if she was working.  She responded with "What do you want?" rather gruffly.  I asked her if there was something wrong.  She said pointing toward Doug's room that once she goes in she can't leave and again asked me what I wanted.  I told her I only wanted wash clothes, but if she was going into my husbands room I only wanted someone who could be tender and caring towards him. She said I can take of that.  So here I am in a dilemma.  Do I leave him for the night with her, when he really wants me to stay.  She came in sat down without introducing herself and started working on a portable computer.  Oh great! I decided to wait until his nurse Wayne got back and talk to him about her.  In the meantime I reassured Doug, said they could call me, read him the comments from the blog and prayed with him. I also read him a poem, Kate Malone, a friend of ours had sent on Epiphany.  He told me he was scared and would like a miraculous healing.  The thought of laying helpless in bed again tomorrow is frightening and overwhelming to him.   I keep encouraging him, reminding him he is getting better.  I think more fears have come these last couple days with our scare a couple nights ago and the doctors' visit yesterday.

When I left I told Doug I would see him in the morning.  He told me not to be too late. :)

Lord of Light and Love, you have created a planet filled with awe.  Your servant Doug is praying for a miraculous healing.  His prayer is to gain his strength and his ability to move.  He asks that you hurry to heal him so that his suffering is stopped. May he also be filled with courage and confidence in your healing power and rejoice daily in the signs of his returning health.  In your name we ask.  Amen

January 8, 2017: Day +50

Yesterday, I finished the blog early while Doug was sleeping, little did I know that the night would turn as it did,

When the night staff came on, I was concerned that Doug's heart rate was high and his blood pressure was rising.  He had been sleeping for some time and that concerned me as well.  When Wayne, Doug's nurse took his temperature it was 102.5.   This all happened shortly before 8;00 P.M.  From then on things became a whirlwind.  Dr. Bench was called, blood was drawn, urine samples, chest x-rays, ice packs for fever, I.V. antibiotics,  and respiratory therapy.  By 3:00 in the morning, the temperature was down, and the danger for the night was over.  Doug was responding to the treatment.

Before treatment was begun though, Dr. Bench wanted to know how I wanted to proceed.  She said that Doug might not be able to survive the night.  How should they proceed if Doug does not respond? Do we want to reconsider intubation? How long would we consider intubation for? If Doug is not responsive do we just want to make him comfortable?  What does Doug want?  They remind me that this is probably not the only time he will go through this if he survives this time.

But, by 3:00 in the morning, Doug was responding, we were clearing some of the mucus from his throat and it was clear he wanted to live.  He said, I am a fighter.  I spent the rest of the night with him, in a recliner, next to him.  We held hands.  He can now ever so lightly grip my hand.  We talked about our life together and how thankful we both are for having found each other. And then we slept.

Morning was busy with more tests, the daytime doctor was surprised by how well Doug looked.  My sister went to pick up my daughter Angie, so that she could stay at the hospital with Doug while I went home for a nap.  It is very difficult to sleep in the hospital.

While I was napping the daytime doctor and surgeon came to see Doug and I.  Angie said they mostly talked to Doug.  They informed him that they found blood in his stool likely caused by the feeding tube.  They are recommending that they put a feeding tube directly into his stomach.  There may be complications because of his weakened condition and general anesthetic can be hard on the lungs.  If he does not regain breathing they may need to consider a tracheotomy.  Angie called me with all this news.

I don't like to the doctors to talk to Doug directly.  I want things to go through me first and then I can explain them.  It is a lot of stress for him.  I let the nurses know I was not happy that the doctors met with Doug with such difficult information.  I let them know that I will talk to them alone in the morning. Angie sent the information out to all of the family. We have more big decisions to make. Our roller coaster continues.

God of Light, we thank you for Doug responding so well to his treatment for pneumonia.  We ask that you continue to be with him as he heals from this new infection.  And Lord if it is your will strengthen Doug and his swallowing so that he will not need a feeding tube, and allow him to begin eating on his own.  God of Light, protect Doug, give him space to heal and time to heal.  We pray that you will send your angels to protect him. In your name we ask it.  Amen

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.