February 7, 2017: Day +80

So many of you responded to my post on why I write this blog.  Thank you so much for your encouragement and kind words.  Throughout this journey we have been bouyed up by the support of all of you.  Your continuous pouring out of love and prayers  have sustained  us during the darkest times and during the slow and sometimes frustrating journey back. My friend Barb, likened this group to the "communion of saints".  Surely you all have been saints to us. We did not start this journey knowing that we would rely on the prayers of this community, but certainly it was the prayers and the support of all of you that has gotten us this far. We are so grateful for the love you have wrapped around us, giving us strength to continue.  Bless you all. 

I have now worked two full days and spent the last 2 evenings with Doug.  Many have asked how is it to be back at work.  It feels very natural to be back at work.  Being in the hospital these past 2 months has really been the alternate reality.  I have been so grateful to have friends with Doug while I am away and he has so enjoyed their company.  Coming into the hospital tonight the nurses and the aides greeted me and let me know how Doug did today.  They are so supportive and thoughtful.

Upon my  arrival at the hospital, Doug was ready to have dinner.  His appetite is back and he is not complaining about the food.  Tonight he had a taco, fries, beets and a cookie.  Okay, he did complain a little bit.  He did not want to eat the beets.

Tonight Doug reported to me about the things he was able to do today. Usually it has been me telling him of his improvements.  Tonight our roles were reversed.  I am so glad he is noticing and happy with his improvement.  He is now able to turn the channel.  That really makes him happy.  He has had to ask someone to turn the TV on and to turn the channels.  I asked him if he could put his left hand on his belly and he moved his hand to his belly and back.  It is following the same pattern as the right side only serveral days later. . We feel reassured that everything is coming back.  He told me that the therapists had him sitting him on the side of the bed and he was able to sit on the side of  the bed for 30 seconds balancing himself.

And so we pray;

Surely the presence of the Lord is in this place.  We see your power in the miraculus improvements Doug makes each day.  We experience your presence in the staff that care for Doug throughout the day.  We experinece your deep love in the those who journey with us.  We see you in the servant ministry of Jane and Doug as they sat as companions to Doug today. And we give thanks.  We pray that you will guide our thinking and guide our actions as we continue on this journey toward healing and wholeness.  In your name we ask it.  Amen.

February 6, 2017: Day +79

It seems like everyday brings small amounts of joy.  Over the weekend Doug began moving his right arm and hand.  He was able to lift his hand to hold the tray table and reach out and shake Fr. Dave's hand.  Then last night he was able to move his left arm and hand off the bed by about 6 inches.  When he does these things he does not seem at all surprised.  I think he has been sending signals to his body all along and nothing moved.  Now when he sends signals something moves.

His respiratory  therapist was just in.  He has not seen Doug in a week.  He was very happy to see that he is breathing so much more deeply.  He had a chest x-ray yesterday and his lungs look good.  His oxygen levels are always above 95 now. He has come so far.

Yesterday his physical therapist came in to Vibra on his day off to get Doug into a regular wheelchair with only a couple of support pillows. Doug was able to sit in the regular wheel chair for more than hour. And yesterday he was able to sit 14 seconds by himself on the side of the bed.  A couple of days ago when they tried, he was able to sit for only 4 seconds.  His trunk and back muscles are getting stronger. So day by day it is coming.

Early last week when Doug got the feeding tube removed, we set a goal for Doug to be able to eat chicken wings for the Super Bowl.  Sure enough he ate chicken wings and loved them.  The aides were so excited for him and his progress they went and got him some little smokies to celebrate from the staff lounge where they were having a pot luck.  He was in heaven.

Our goal for this week is for Doug to be able to feed himself some finger food.  Last night he reached up and took two chips off his tray and tried to make it to his mouth.  He dropped them on his chest, but he was pretty close to making it happen.  I was so excited.  I was totally involved in the last few minutes of the game when he said darn! I looked over and there were the chips.  He just keeps trying to do more.

Today I went back to a regular schedule of work.  While I was gone, three of our friends kept Doug company.  He had a wonderful day with these kind and caring people.  Thank you so much Jan, Joanne and Jerry. You made my day easy.  We are both so grateful.

It is time to pray.

God of Beginnings, You go before us always. Give us eyes to see Your presence in all things and to trust in your goodness.  We are so grateful for each small step of progress.  It sustains our hope. There are challenges to be sure.  Help us to let go of fear, live fully into the mystery of the unknow and await the promise of new beginnings and new life.  In your name we ask it.  Amen.

February 5, 2017: Day +78

One of my colleagues asked me the other day why I continue to write the blog.  Others have asked me similar questions.  I can say I don't have an easy answer to this question. The answer is rather complex.

Several years ago, I learned of the Caminio de Santiago de Compostella, a 500 mile walking pilgrimage across northern Spain.  The minute I heard of it I knew I wanted to do it.  I had for many, many years wanted to go on pilgrimage.  Sadly though, Doug could not go with me, because he could not walk that far because of having multiple sclerosis.   And so I decided to walk it, praying for his healing and for the healing of my son-in-law who has lupus and all my friends suffering from auto-immune diseases. Prior to walking the Camino, I read over 15 books written by others who had walked the Caminio.  Reading their books I saw them reflecting on the journey and so I decided to blog the experience to document my own spiritual journey and to share with others who were interested in the pilgrimage or just interest in walking the Camino.

Then last year I decided to go on pilgrimage to Italy, Rome is another ancient pilgrimage,  and once again I prayed for healing for Doug.  On this pilgrimage it was important to me to to walk through the "Holy Doors" at St. Peters to ask for mercy, for Doug, that he might be healed from M.S. Every 25 years or so the pope opens the "Holy Doors" to offer special acts of forgiveness or mercy.

After making plans to go to Rome with my friend Scotti,  Doug told me that he had always wanted to go Rome.  I did not know this.  With Doug's disability progressing I knew that we needed to make this trip soon, before he would no longer be able to travel.  While attending a clergy retreat, I received an email about a cruise that began in Rome and traveled the Mediterranean, with a stop in Istanbul and Athens. More places I knew Doug wanted to go.  And so I booked the trip.  Again I blogged the experience and we traveled praying in holy sites for Doug to be restored to health.  And then the night before returning home, my son-in-law Tom sent information that had just been published on stem cell transplants with outstanding results.  This research is the closest thing to a cure for M.S. that we have found.

After a lot more  research we decided with the great odds of 80% or better of stopping the progression of Doug's M.S., this was treatment worth getting.  We began making plans for this Grand Camino of seeking wholeness and healing  by traveling to Puebla, Mexico.

And so why do I continue to write?  This pilgrimage is not over.  We continue to pray for healing and wholeness, with faith and expectation.  We have not yet reached the destination.  When a person is on pilgrimage it is a commitment to follow God.  When we left for Puebla we did not go just to receive treatment from an internationally renown clinic. We went, following a call to healing.

"Pilgrimage calls us to be attentive to the divine at work in our lives through deep listening, patience, opening ourselves to the gifts that arise in the midst of discomfort, and going out of our inner wild edges to explore new frontiers". ( A quote from The Soul of a Pilgrim, by Christine Balters Painter.

With this in mind, the reason I write each day, is to take the time to reflect on the journey, to look for the divine in our midst and to discern our next steps.  We travel this journey in expectation, in trust and in wonder. I sense that when we reach the end of this journey, we will find healing in unexpected places and wholeness will be redefined for us.

We pray,

God, who navigates us through life,  we thank you for your gentle, but persistent call.  We thank you for being with us at all times, through each twist and each turn.  We thank you for making your self known to all who seek you.  Today we thank you for the friends who share the journey and open themselves up, to reveal their own stories along the way.  As we continue this journey, help us to trust in your guidance and in your presence.  Help us to delight when progress is slow and when progress is fast.  And we give you thanks for the movement Doug has regained this day in his left arm, for sitting in his wheelchair and on the edge of the bed.  We are filled with awe and delight.  Amen, Amen.

February 4, 2017: Day +77

Today was a special day for Doug.  I was able to bring our dog Stryder to spend the day.  Doug has been longing to see him.  Initially I had to wait until Doug was out of Neutropenia and then I needed to wait until my knee was strong enough to handle him.  I brought his dog bed, dog bowls, food and lease. To bring him to the hospital I had to provide the supervisor with a copy of his immunizations and get her permission. Stryder got a lot of attention from the staff and a few patients before I even got to the room.  But when I walked in with Styder Doug was delighted.  All day, he was so happy to have in the room with us.  We both have missed him.  My sister Kate has been keeping him for us since I have not been home and he really needs company.  It felt good for the 3 of us to be together today.

Our friends, Ted and Ludee came by to visit.  They brought Doug a Coke which he just loved and brought both of us piece of lemon pound cake which was delicious.  It was great to have some time with them.  While there Ludee took a family picture of us.  So sweet...

I ran off with Angie, my daughter for a couple hours and we did some shopping at Whole Foods and had an early dinner together.  Angie took me over to see the house they are selling in Boise.  It was nice to do these things together.  I have not seen the house because I have been totally focused on Doug since we got back from Mexico.  It was nice to know I could be away from the hospital and know that Doug was in good hands and that he could call for help if he needed it.

The nurses and CNAs are telling me that they all want to care for Doug.  They think he is really nice and he is always appreciative of them.  We often have visits from the staff that are not assigned to his room. They come by just to see him.  Everyone is very attentive here.  Today we had extra visitors, because many of the staff wanted to meet Stryder.

Some more good news, Doug is having no pain in his back today.  It all resolved. Tonight I looked over and he had  reached up and had his hand on his serving tray.  He has not done anything like this for months. It was a simple thing but it was amazing to me.

And so we pray

God of Surprises,  we give you thanks for the healing of Doug's back. We thank you for all who care for Doug and provide him the support he needs.  We thank you for good friends who look after us in so many ways.  We ask you to bless Doug in his recovery and bless Stryder as he ministers to Doug in a very specific way.  While Stryder is an old dog, we giv you thanks for  him and the life he brings to us.  Amen

February 3, 2017: Day 76

We covered a lot of ground today, but let me start with some fun news.

When I arrived at the hospital physical therapy had been working with Doug.  He had a great session. He was able to sit on the edge of the bed with no supports for 4 seconds.  He balanced himself.  We were very excited.  He also stood today with just the support of the therapists.  That was another big accomplishment. His physical therapist wants to work toward transitioning him to a regular wheelchair this next week.

His occupational therapist came in and did some new exercises with him.  Today not only was he moving his arm to his belly but also lifting his arm up on his right side.  His  left side is still slower to respond.  However he was able to turn his hand over on his left side and pull his whole arm back from the elbow and shoulder.  He is now able to move both shoulders back and forth and up and down. We did show and tell all day with everyone who came into his room.  Everyone is excited over his progress here.

More good news.  He was cleared by his SLPs to have a regular diet.  No more restrictions.  He has been asking for a hamberger for weeks.  So today, I went and got him a Smash Burger, fries and a Coke. He kept saying "This tastes so good" over and over and over.

With support from Marsha our SLP, Doug is now eating
Smash Burgers

I went and looked at 3 potential facilities to transfer to for rehabilitation and medical support.  The transition coordinator here at Vibra was in the hallway when I started to leave.  I told her about Doug's progress.  I told her how everyday he gets better. Who knows what will be happening by next week.  She thought I might want to check with the Elks, now owned by St. Lukes.  And so I did.  I think out of all the places I looked at, that St. Lukes may be our number one choice.  It is not very convienient for me.  They have a sub-acute floor and an acute floor. Doug can transition between the floors as appropriate to meet his needs. They also have a higher nurse to patient staffing and doctors on staff.  They have specialists in neuroligical disorders. St. Luke's comes highly recommended by one our favorite nurses here, and I have had a couple other people tell me very positive things. I feel hopeful about finding the right place and feel positive that Doug is making good progress and will be ready for the next stage in this grand Camino. I am thankful for some wise words today from my friend the Rev. Karen Hernandez.  She said that God always goes before us in our transitions. I am trusting in that.

Lastly, Doug is having substanial pain in his back tonight.  We are not sure why.  It is midnight and I am still with him here at the hospital.  We are not sure of the cause of the pain and hope it is neurological, related to the nerves in his back waking up or a possible strain from the work he did with the PT earlier today.  I just hope it is not a kidney infection.  The doctor has ordered some pain medication and so hopefully it will begin to reside.

Time to Pray:

God of Possibilities, God of Light, you go before us always, with the reminder to "be not afraid". Today had so many twists and turns and yet with every hill to climb, there was a glimpse of the vistas ahead. Thank you for the blessing of wonderful people, working so diligently to make a difference in peoples lives from our therapists and nurses to the staff I met in the many facilities I visited today. We are so grateful for the progress Doug is making each day. It fills us with hope for the days to come. Be with him this night.  Ease his pain and may he awaken in the morning rested and well.  In your name we ask it.  Amen

February 2, 2017: Day +75

As I went to bed last night and woke up this morning, I was feeling more relaxed then I have in a long time.  Doug is medically stable, he is receiving really good care, my leg is feeling better and I was rested.  Before heading to the hospital I decided to stop and pick up a latte and muffin for Doug from Flying M.  This is his first latte in a couple of months.  He has been longing for a latte and scone.  The scone is till too crusty, but the muffin was a great substitute,  He loved it.

When I arrived today he was in group therapy.  A few days ago they invited him to group therapy, but he declined.  He said that he had ran many group therapy sessions over the years and he was not going to one.  I inquired a little more about this and found out it had nothing to do with mental health, but rather physical and occupational therapy. We had a good laugh. With this new information he decided to go.  Coming back from it today, he was not too thrilled.  He said he hated to see so many pathetic people and there were people older than him that had more skills than he does.  He felt down. I am not sure he was ready for the group since he is still really limited.  I think individual therapy might be better for him for a while.  The good news is that he was up for about 3 hours in the wheelchair.  His ability to sit with limited supports has gotten so much better.

This afternoon the nurse came in and said the doctor had written the order to take out the pic line and that they are beginning to think about transition.  We knew it might be coming but still our jaws dropped a little.  Doug said that he did not want blood drawn with a needle.  I asked to please see the doctor.  The physicians assistant came to meet with us.  I think I am still a little shell shocked from St. Al's. There, when they made the decision for transition we would need to be ready to move the next day.  I was all prepared to fight it, because I want time to find a good placement and I want to assure that I can be with Doug during the transition and I had planned on returning to work on Monday.   The transition person came to meet with us.  She said we are only beginning the process. I will have tomorrow to go look at facilities and we can anticipate a move late next week. Having more time feels a lot better.

PIC Line

Doug is being referred to a sub-acute facility because physically he is not able to participate in 3 hours of rehabilitation therapy.  The number one facility on the transition list is River View on Americana in Boise, Sunny Ridge Rehab and Trinity Mission in Nampa. St. Luke's and St. Al's rehab usually require that you can do 3 hours of rehabilitation and so they are probably not an option yet.

So overall, we should be celebrating that.Doug is doing so well medically and he is improving very slowly physically.  But transition is scary.  We would both find this move so much easier if Doug could move on his own enough to press a button for help or care for himself.  We pray when he moves next week he will be closer to independence.

Here is some late breaking news. We were just getting Doug ready for bed and he moved his right arm from his side to his stomach and back again.  I was so excited and astounded.  I told him to do it again and he did, several times.  I was in tears.  It is real functional movement.  We are on our way!

And so we pray:

Most Merciful God, we give You thanks and praise for Doug's continued improvement.  We are so thankful for the many caregivers here at Vibra. We are thankful for their gentle care and concern. We are thankful for the medical treatment that is healing Doug.  Be with us now as we prepare for another change.  Fill us with hope and grant us peace as we anticipate this move.

February 1, 2017, Day +74

I guess I am back to counting the days.  Today was my first day back at work, Doug's 56th day in the hospital and it has been 74 days since Doug's stem cell transplant.  Each day means different things.
Going back to work today, means that Doug is well enough for me leave him some of the time.  It means he is healing.  Since this is Doug's 56th day in the hospital it also means that he still has some significant needs that can't be resolved at home. Counting the days since Doug's transplant is hope. We still believe that there is a very good chance that the progression of his MS has been stopped and that he will walk again.


Lots of people have asked about the other patients that went through the stem cell transplant with Doug.  I am happy to report that they are all doing well.  Most people never have the difficulties that Doug has been having.  From the research we have done, we have learned that from 1-3 percent of patients receiving HSCT may develop pre-engraphment syndrome.  When this happens, the body develops an inflammatory response to the new immune system.  Since Doug did not test positive for bacterial, viral or fungal infections, we are led to believe he had an inflammatory response.

He currently has been diagnosed with critical care neuropathy or poly myopathy .  It occurs in about 60% of patients who are on a ventilator for more than 7 days.  It is more likely when a patient has multiple organ failure and has an underlying disease or condition, like Doug's multiple sclerosis. He had multiple organ failure in the hospital, with the acute respiratory distress, heart attack and kidney failure. Also when he was most ill he had elevated blood sugar levels and was sometimes atrial fabrillation. He was very, very sick.  The doctors said if he survived it would take months to recover.  And so we are now 36 days since extubation and over a month into recovery.

So how can I return to work?  Because we are now into recovery. Doug will do well to have the stimulation of others in his life and I will do well to have some normalcy return to our life.  During these last few months I have been blessed to have a wonderful team holding things together in our Student Support Team.  I am so grateful for all who have come to our aid. I am especially grateful for Earnie Lewis who stepped in for me these past months and his willingness to help again if we need him. Thank you so much Earnie!  I should have taken pictures of the rest of our District team today, but I was not thinking.  They have all been a part of the journey.

Earnie Lewis

And tonight thank you to our friends Vicki and Rylene. They stayed with Doug today to keep him company and to help with the things he needed.  We are both so grateful for their generous support and kindness.  I was able to be at work today without having any worries about Doug.  I knew he was in good hands.  Bless you my friends.

And as for me, my knee continues to heal.  It is still a little swollen, stiff and sore but very manageable.  I go back to the doctor on Monday.  I suspect he will recommend physical therapy, but we will see.  I appreciate every one's thoughtfulness and prayers. I have been comforted by so many.

And so we pray:

Holy and gracious God, God of Light and Love, God of Hope and Expectation,  we give thanks for each of our days: for the days of struggle, for the days of hope and for the days of progress.  We give you thanks for the travelers on this journey with us who lighten our load and lessen our burdens. We give you thanks for true friends.  Be with us in the days to come as we live into the expectation of wholeness and healing.  Give us courage and hope in our struggles.  In your name we ask it.  Amen